It's been a while since I last blogged, so there's a lot to catch up on.
There have been more hospital visits. Sara has started eating again. There's been a visit to the pain clinic. And today we are going back to the IBD clinic to hopefully make some decisions about Sara's next phase of treatment.
We're not really keen on the next phase of treatment which is an infusional drug called infliximab. But we've heard good things about it and we hope it will mean Sara can start to lead the life of a normal 16 year old. She's had all the preliminary tests which include a chest x-ray and TB test. All were fine, so really now it's up to the doctors and the blood results. That goddamned CRP which I have nightmares about is slowly creeping up again, so I'll just have to be patient and wait to hear what the team think.
This time however, I'm taking some reinforcements (namely Michael my husband and Sara's dad), there is something to be said for having an assertive male deal with the doctors. He is able to get responses and answers that would not be given to either Sara or me. So it's an attack on all fronts today.
I'm sure Sara will tell you what it's like to eat again after 8 weeks, the pleasure and the agony of ongoing stomach cramps and nausea. Her face as she sipped her first glass of apple juice was something to be seen! I will never forget how happy we all were to have her back at the dinner table and eating with us as a family. Even though things are really nowhere near back to normal. It felt like we were headed in the right direction.
It was also suggested to us by the pain clinic that maybe there was more going on than just Crohns. So that's what we need to talk to the doctors about today and I think it's important we are all there to hear what they say.
So just a quick post to let you know how things are going and I'll try and post tomorrow and let you know how the clinic visit went today.
Fingers crossed
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